KIDNEY FAILURE - A PERSONAL JOURNAL

[Peter Langley]

ONE YEAR LATER (MORE OR LESS)

My wife, Pat, suggested that it was time for an update, since it has been almost a year since I last added to this journal, and I went back and found that I last updated on April 27, 2000. It is now late January, 2001.

It has now been more than sixteen months since the transplant, and my life has continued to be a daily miracle. Medically, I am now going to clinic every three months, and Shands has just changed the schedule to a specific time - later in the day - which avoids the five a.m. drives to Gainesville for the blood-letting, but fairly well blows the whole day. I think I preferred the early mornings and having a more productive day after clinic.

Also, clinic is not the same as it was originally, in that Dr. Silkerson has gone back to the University of Minnesota, and I have not seen Dr. Crabtree on at least my last two visits. These were the two that I saw exclusively over the early months after transplant, and I felt a personal connection with them. Their personal attention and concern were so evident and so amazing that it was clearly a major support emotionally as well as medically. At least I seem to have the same nurse for check in on most visits, a truly nice and caring man who has been a constant upon which I have come to rely.

Apparently, when things have become routine and are going well, you are shifted to other doctors. I have no complaints about the new doctors that I have seen. They are just as patient and just as personal, and take all of the necessary time. But, somehow, it is not the same. It’s like a friend has moved on in some ways. When you have had a transplant, I guess that a total connection with the professionals who are responsible for keeping you alive is reasonable and expected. In any event, I miss them.

My creatinin levels went up from 1.7 to 1.9 for several visits, but were back down to 1.7 this month, for the first time in six months or more. Also, I had lost 13.5 pounds over the past three months, despite the holidays. This, I feel is as a result of carb counting, so it has more than one benefit.

My medications have leveled off. I am taking 10 mg. of Prednisone (actually, a generic), and 150 mg. of Imuran (again, a generic). Neoral is down to 75 mg. twice a day, and is not a generic. It is the most expensive of the medications by far. I also have medications for high blood pressure, diabetes, and other various and sundry concerns. The medications are fewer than was predicted before the surgery, and I am thankful. Other than preparing little baggies of morning and evening medications when we travel, the medications are not even a problem.

I am going to write to Dr. Howard, my surgeon, by E-Mail to inform him of one recent event which I find amazing. My wife asked me recently what had happened to my scar from the surgery. As far as we can tell, it has disappeared. I think I indicated that Dr. Howard is a genius. I am even more sure now, and was happy to read that his alma mater, the University of Minnesota, recognized it by honoring him recently.

Beyond that, my diabetes has regulated, and I have gone from four shots of two types of insulin per day to one shot of long-lasting (NPH) in the morning. Not only that, the amount of the morning shot has been reduced dramatically. Counting carbs works! It also keeps me from cheating as much. I can still take Humalog if I mess up badly, but it is rare that I am required to. Even eating at Emeril’s in Orlando (Emeril Lagasse) and having Creme Brulee did not require an extra shot.

As to skin, that is something of a mixed bag: I have had two moles removed for biopsy, and one was a basal carcinoma, which means a scrape and burn, and I mentioned previously. The more recent turned out to be totally benign. Of course, I could identify with President Clinton in the last days of his presidency when I knew what his basal carcinoma was, and recognized the treatment which we shared. So there have been no real problems in that arena. However, my skin has become hypersensitive to bumping and bruising. For example, the last clinic visit a couple of weeks ago, I got a band-aid on my hand after the blood taking, and when I pulled it off, it ripped my skin and that bled worse than the needle had. Also, where the band-aid had been, my hand turned purple and swelled up. I asked about this, and apparently those wonderful immunosuppressant drugs have an adverse effect upon blood platelets below the surface of the skin and cause this condition. Also my skin is very dry. My wife’s grandfather had skin like this, only more so. Apparently, it is something that I must contend with, but it - like all of the other minor inconveniences - are nothing compared to having my life back.

Another major part of my life since the transplant has been the feedback from this journal. I have “met” some wonderful people through E-Mail, some of whom have received kidneys and some of whom are waiting for one. Others have given kidneys, and wanted to get in touch with Diane. Many have simply had questions, while a few have maintained correspondence over several months, and I have felt a true kinship with these. I only hope that they have gotten as much out of the communications as I have. The other feedback that I have received is a rather amazing recent E-Mail from Phillips Academy in Andover, Massachusetts. It seems that a teacher there is working on a project with Harvard on medical ethics, and is utilizing my journal in some way in the project. Amazing! As the teacher said, you never know who is reading this.

As to life and family, the grandchildren are wonderful, and the youngest, Alexa Skye, was down with her parents for her first birthday, and we had a party at our house. This was her first trip to Florida, and we loved having her. Kelly Ann, now almost five, is a constant in our lives, as we keep her with some regularity, and love every minute. In fact, we took her with us to visit our son and daughter-in-law and Alexa Skye just after Christmas, and had snow for the entire visit. We have wonderful pictures of the two grandchildren in the snow, and wouldn’t trade it for the world.

Pete and Mel are doing wonderfully, and Pete’s job has improved to where he has entered management level with Bell South. Now he and Mel have to travel, but everything in Indiana remains wonderful.

Lynne has changed schools since last I updated, and loves her new school. It has given her a new lease on her teaching life. She has a new boyfriend / fiancé, who teaches with her, and he has been a very positive change in her life as well.

Pat continues as an Assistant Principal, and I continue working as an attorney. I have also just started taking lessons in stained glass, and am enjoying it. I think I may even learn how to do it with a few more lessons and some practice.

Our trip to Nova Scotia and Montreal was both amazing and wonderful. I would recommend both for a trip. We attended the Tatoo in Halifax, and it was a most amazing show. The most wonderful stop, however, was at the Tattingstone Inn in Wolfville, Nova Scotia. We stayed in a separate two-story accommodation called Toad Hall, and discovered that Mel Gibson had stayed there on vacation not too long before. The food at that Inn was among the very best that we have ever eaten, and Pat feels that it was the best. We can both recommend it highly. However, almost all of the places that we stayed in Nova Scotia were amazing. We found them through a web site called Unique Inns of Nova Scotia, and while we did not stay in all of them, none of the ones we did stay in disappointed. This one simply stood out above the others. The people in the bed and breakfasts were most friendly, as were all of the people we met in Nova Scotia. The tides were totally awesome, as was the countryside. We will be going back.

In Montreal, we stayed in the Queen Elizabeth (La Reine Elizabeth), and the hotel and restaurant were more than satisfactory. The city itself, with the cafes and the underground shopping, was amazing. For those who enjoy shopping (and my wife is a professional in this arena), Montreal and its underground shopping centers, gets five stars. Pat even said it was better than the Mall of American in Minneapolis-St. Paul. Also, old Montreal is amazing, and the jet boat white water trip is an experience, although I have to admit I was miserable with the cold. I have never been so cold! For exhilaration, it is unsurpassed, if you can stand the cold. Pat had no problem, so maybe it was as a result of some of my medications which were higher last summer than now. I don’t know.

On the down side, from my last update, the judge that I mentioned died of cancer, and the bailiff with leukemia has been given less than two weeks to live. He has had two bone marrow transplants, but neither was effective.

Diane, on the other hand, is doing wonderfully. We communicate regularly by E-Mail, and she continues to do very well physically, and is continuing to be very original with writing and with crafts of many varieties.

I may update again if the situation warrants it, or things change. On a totally personal note: thank all of you who have read any or all of this journal. If it has helped any of you, I am most grateful. All I know for sure is that writing it, and seeing the “hits” and hearing from you has been invaluable to me and my recovery.

REJECTION